Kimchi Latkes

I’ve become aware that the president of the National Down Syndrome Society (NDSS) is sending out a form email to community members who have expressed concern or frustration about NDSS’s approach to healthcare legislation in Congress. The American Healthcare Act (AHCA) and the Better Care Reconciliation Act (BCRA) have both contained efforts to scale back consumer protections, as well as cut…

Medicaid is Inclusion #NoCutsNoCaps #SaveMedicaid

Let me tell you a story. While you read, I want you to be repeating this in your mind: Medicaid is inclusion. Medicaid is inclusion. Medicaid is inclusion. The last century has been increasingly positive for people with disabilities. in 1949, the average life expectancy for a person born with Down syndrome was 12. Today, it is 60. People with Down syndrome were systematically excluded from…

As Witness to Life

Death came twice this week. One after living many years; one after living only a few. One is carried in my children’s blood; one I’ve never met face to face. One taught me about what has been; one taught me about what could be. A caterpillar constructs its own coffin, dissolves itself, then rises again. I try to accept that what life shows me, I may only witness, not have. But I have so many…

#GameofThrones, #Disability, #Hodor (and a spoiler alert!)

There is a big spoiler in here. There is a big spoiler in here. There is a big SPOILER in here! Ok, now that’s out of the way, let’s continue. Hodor. I’ve always liked his character, mostly because the writers at Game of Thrones didn’t seem to be trying to make him into the next Lennie Small. But after seeing the last episode, I liked his story arc even more. Short breakdown: White walkers show…

Dear Mouse: Flight and Grace

Dear Mouse, You don’t remember your first moments of life, but I do. I used to think it was because of the pregnancy-labor-holy-cow-I-made-a-human progression that primed me for such technicolor memories, but now I’m not sure. Adoptive parents describe that first moment with the same kind of detail and intensity, so maybe it is simply that we parents all experience a similar kind of intense…

How can we #ReModelMinority? What #EthanSaylor and the #AAPI community have in common.

50 years ago, New York Times writer William Petersen wrote an article titled “Success Story: Japanese Style” and in it, coined the term “model minority.” Today most of us know what this term means, but in case you don’t, here is a fairly good history of the term and its social and political impact for the last half century. What I don’t think many people pause to consider is that the model…

Book Review and a Giveaway: The Parent's Guide to Down Syndrome

Hey, before I start: I got an early copy of this book to review, ‘kay? Okay. I think that most parents who have a child with Down syndrome remember cracking that first informational book or pamphlet. I also think that the parents who recall that moment with any fondness are in a very serious minority. When I started really believing that LP had Down syndrome (but before we got any test results…

A little personal update. Happy New Year! xo

Five years ago, we bought a house in a little East Oakland neighborhood called Maxwell Park, and I immediately ordered a bunch of bareroot trees from a nursery catalog. It was my first claim to an actual piece of dirt, and I wanted that dirt to bear literal fruit as soon as possible. I knew that trimming the roots and cutting down the main trunk was good for a dormant tree, but my goodness did it…

Dear #Pixar: #InsideOut and Papercut Deaths

***HEY, YO. There are some spoilers in here. Just sayin’.*** Dear Pixar, I like you. A lot. My early childhood was spent in stuffy computer labs, arguing about Oregon Trail. Somehow, we all knew that those five pixels were supposed to be a bear. I can still feel the suspense, watching that one pixel move towards the five pixels, wondering if we had successfully shot the bear and wouldn’t…

Therapy for Children with Disabilities

Imagine that someone—let’s call her F. Poe Tenshal—tells you that your baby needs to run faster when he grows up. Ms. Tenshal says that in the world, people need to run at a certain speed in order to do things. Important things. Ms. Tenshal enrolls you and your baby in a program. This program, she says, will allow your baby to reach his fullest, fastest potential. His true self. His best self.…

I saw #WhereHopeGrows this weekend. Here's what I thought.

Before we start—there are a couple plot hints I discuss here that I don’t think give away the movie, but take away a tiny bit of its suspense. I emphasize, tiny. Minuscule, really, electron-sized. I’ve warned you though, so my conscience is clean.

Watching “Where Hope Grows” made me feel like I was at the mercy of an inexperienced dance partner who, despite the best of intentions, kept stepping…

Have you ever said bad things after calling an automated customer service line? Swearing, maybe? Throwing objects, maybe? It is like being in an M.C. Esher painting, isn’t it? Who knows if you’re going forward or back, up or down.

M.C. Escher – Relativity

I felt like that after we found out about my son’s Down syndrome. In the Pit of Google, I found simultaneously too much and not enough…

#WDSD15: A Day in the Life with Down Syndrome #DSDN #LifeWithDs

I’ll never forget those first couple days. I’d already started thinking that LP had Down syndrome but I hadn’t managed to utter the words. I thought, maybe, I’ll click my heels, wish really hard, and I’d be back from this alternate universe that seemed to be pulling me in. During the day, I managed to almost convince myself that I was, indeed, back in my sepia toned original life. Still had the…

What #fiftyshadesofgrey has to do with my 6yo daughter's fairy tale.

Mouse has been writing a lot of stories lately.  Her first story with any kind of recognizable story arc was about… A princess.  Of course.

It has had me thinking quite a bit about fairy tales, and the power of narrative over our lives.  It is a chicken and the egg question, of course, whether narrative informs our world or it is the other way around.  A realistic guess is that it goes both ways.

#Disability, #Inclusion, and the #ZombieApocalypse

Look.  Contrary to how we seem to be acting, we are not actually in the zombie apocalypse.  Or, any kind of apocalypse at all. If you doubt my claims, I suggest you look out of your window.  Go on, peep.  Are there undead corpses roaming around?  Are there locusts and frogs raining down from the heavens?  The sky is up high and the ground is down low, right?  Oceans where you left them?  Phew! …